Fighting for the Spirit of the ADA

Special Note: Sculpture subject Jennifer Keelan Chaffins is featured in a 2021 Oscar-nominated and Peabody Award-winning Film! < link

At its heart, the Americans with Disabilities Act (ADA) is simple. This landmark law, passed in 1990, is about securing for people with disabilities the most fundamental of rights: the right to live and participate in the world. It ensures they can go places and do things that other Americans take for granted.

What’s happened with the ADA since it passed in 1990? For lifelong disability activist Jennifer Keelan-Chaffins, it’s a constant battle to keep the conversation, and the fight for the rights and inclusion of Americans with disabilities, alive and prioritized.

Jennifer raised awareness about the passage of the ADA in 1990, when at just eight years old she got out of her wheelchair and worked her way up the 83 stone steps to the U.S. Capitol Building during the Capitol Crawl protest. Their activism helped to pass the ADA into law, inspiring hope for people with disabilities. 

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Photo by Tom Olin

Now at age 38, Jennifer contends with many of the same barriers that the law was meant to remove.

Mya, Jennifer’s service dog, was perplexed watching our sculpture-forming activity. She thought it was a very strange therapy session.

Jennifer’s story and the ADA’s upcoming 30th anniversary inspired me to share the ongoing struggle for equality in the disability community by creating and exhibiting a monumental, lifelike, painted sculpture formed from Jennifer’s posed body. All the Way to Freedom portrays a person with disabilities caught both between the attitudinal and physical obstacles faced by persons with disabilities despite the efforts of the ADA to remove them.

Interestingly, the entire creative process of Jennifer’s sculpture turned into a perfect illustration for the daily challenges of living with a disability. It was a challenge for us to figure out how to manage the four flights of stairs to my studio, how to get Jennifer’s body posed for modeling, and even how to prepare for a potential asthma attack or body spasms from cerebral palsy during the sculpture’s formation.

Indeed, moments before the sculpture was sturdy enough to be removed Jennifer’s service dog, Mya, sensed an oncoming asthma attack and alerted Jennifer’s mother, Cyndi. Jennifer was scared but remained still while we prepared to remove the form. As we lifted and carried the structure away, Cyndi jumped to her side, helped roll Jennifer over, handed her nebulizer and helped her work through the body spasms. Jennifer let go a few tears, then relaxed her body and emotions with the assistance of Mya and Cyndi. I could only think – wow! – she’s still got it! We just witnessed the strength, courage and determination she had to climb the Capitol steps one very hot spring day 30 years ago.   

This experience impressed upon me how tiring it can be to overcome the barriers that people with disabilities experience every day. However, with Jennifer’s persistence and my planning, preparation, experience, and with the help of my dedicated team of art assistants, the sculpting session went better than ever. 

All the Way to Freedom, formed directly from Jennifer’s posed body.

The Fight Continues

My exceptional art team with Jennifer (upright in her Permobil wheelchair) and mom, Cyndi.

James Brady quote taken from : Worklife. A Publication on Employment and People with Disabilities, Fall 1990, Volume3, Number 3, “ADA , A Special Issue”; pg. 22.

Jennifer still believes what she said on March 12, 1990: “I didn’t climb all those steps for me, I did it for all kids so that life can be better for us as we grow up. I’m doing it for future generations.” Here she is today, still climbing barriers, navigating a seemingly endless course of obstacles both physical and attitudinal. 

It’s really up to all of us – and for our mutual benefit – to make the promises of the ADA a reality in our time.

Everyday Ways You Can Support Persons with Disabilities

• Help persons with disabilities to vote. The greatest power any American has is the ability to vote for legislation and representatives that champion their causes. Help persons with disabilities by giving them a ride to the ballot box, helping them to register and maintain their voter registration, and contacting their representatives about the issues that matter to them.

• You too have the power to vote! Vote for ADA-friendly representatives and ballot initiatives. Call your representatives and demand affirmative action on enforcement of the ADA and passage of the Disability Integration Act (DIA).

• Acknowledge people with disabilities. Smile, shake their hand, greet them — just as you would with any other human being.

• Shovel the walk. During the winter, shovel your sidewalk, help a neighbor shovel their walk, and, if you own a business, ensure that all walkways around your building are free and clear.

• Never park where it would block a walkway or in a handicap spot. It’s against the law to park in a handicap parking space, and even blocking that space may prevent someone from accessing care, supplies or a loved one.

• Respect service animals. Service animals are highly trained and disciplined to care for their owners. Do not pet them, offer them treats, or otherwise distract them from remaining alert and providing crucial care.

• Make your business accessible. If you cannot afford to install automative doors, install a call button and train employees to have awareness for the needs of those with disabilities.

• Promote inclusion. Include them at places of worship and social gatherings, and even help them find employment.

• Do the little things. Open doors, help people navigate and help with reaching out-of-reach items — these go a long way in making someone’s day.

Watch the TV News Story

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All the Way to the Top

Jennifer is the subject of a brand new children’s book written by author Annette Bay Pimentel, All the Way to the Top: How One Girl’s Fight for Americans with Disabilities Changed Everything.

It’s the story of how one little girl helped forever change the conversation around people living with disabilities in America. Available at both Barnes & Noble and Amazon, it’s the perfect addition to any bedtime library for any little child with big dreams.

Sculpting Paralympian Brandon Lyons

As I inquired about the next Paralympic model for my United States Olympic & Paralympic Committee Visitor Center art project, Brandon Lyons was ecstatically recommended: “You should see him do endless pull-ups in his wheelchair!” “He’s an animal!” “Yeah, he’d be great!” Little did I know how amazing and beautiful Brandon and his story would be. 

Brandon’s Para journey began Memorial Day of 2014, at the age 24. Brandon dove off a shallow pier and the resulting accident caused paralysis below his chest. After this terrifying event (including a problem with the helicopter en route to the hospital) and all-consuming rehabilitation work, Brandon was back to his job at Ernst & Young within four months. 

In 2016, Brandon discovered the joy of handcycling. In 2017, he qualified for the USA Paralympic Cycling team and became a resident of the Olympic & Paralympic Training Center (OPTC). Currently, he’s pedaling hard to win gold at Tokyo in 2020 and competing in fabulous, faraway places like Italy along the way.

I was very pleased and honored when Brandon eagerly agreed to my invitation to create a sculpture with him. I was even more delighted when I discovered how wonderful he is to work with and what a pleasure he is to know. The following Saturday, on his way to his weekly cycle training in the nearby foothills, Brandon stopped by my studio so we could design his art. When I went out to meet and assist him in the parking lot, Brandon had already gotten himself into his wheelchair, taken his handcycle out of his car, grabbed his backpack and was ready to go.

Brandon and others at the O&PTC wanted me to cast him posed on his cycle. I’d never cast anything that large, let alone a figure combined with a machine or device, so I wasn’t sure it could work. I had something else in mind but wanted to at least give their vision a try. When I stepped back to look at the form of this first design, I was elated. It conveyed the energy, power and speed of Brandon, man and machine. . 

After the sculpture was quickly formed, hardened, and removed from Brandon, we were awed by its size and physical detail. However, as the minutes passed, it started to slowly collapse from its height and weight, like the Wicked Witch melting to the floor. I was horrified but still determined. I could not let my Paralympic subjects down by giving up. 

I was later able to resurrect the structure mostly to its original form. It was still powerful and fascinating, and Brandon's figure emerged through it. But was it good enough? Could it still connect viewers to Brandon and inspire them with his story? Brandon was leaving soon for a ten-day competition trip. If I was to meet my deadline and have it installed at the USOC Visitor Center by the fifth anniversary of Brandon's paralyzing accident, there would be no time to recast. 

I invited many people who were unfamiliar with Brandon's project to look at it so I could study their response. Thankfully, the look on their faces confirmed that this artwork was more than sufficient to fulfill its purpose. For some who were familiar with my art, it was their favorite piece. Accidents and imperfections can be advantageous in art, allowing the mind's eye to imagine and invent. 

I wondered at the serendipity of it all – Brandon overcoming his permanent disability to participate fully in life, and his sculpture’s once perfect form now altered but still beautifully compelling. I also wondered at how his feet disappeared from the structure, which curiously illustrates that this cyclist cannot use his legs. You likely wouldn't notice this about the sculpture unless it was pointed out, just like I now only see Brandon's vast abilities, not his disability nor wheelchair. 

The resulting artwork of Brandon reminds me that my art is often a painting as much as it is a sculpture. Its form comes alive with big brush stokes and small, reflective highlights. As you walk around it, stepping closer and away, it seemingly transforms – like getting to know a person after seeing a first visual impression.  

When we returned to his car after that first design session, Brandon surprised me again by flinging open and holding the door for me as he allowed me to pull his precious, custom-fitted handcycle out of the studio. He could have managed to do this all himself, but just like making art, it was more gratifying for us to work together. 

Click hear to watch news coverage of Brandon’s Sculpture unveiling.

Learn more about Brandon at BrandonMLyons.wixsite.com and TeamUSA.org and @iron.lyons

Follow the conversation at #Sculpting Para #SculptingBrandon

P.S. My ultimate goal is to help fund Brandons’ Epidural Stimulation Trial after Tokyo 2020. This is his next 5-year goal – to restore the functioning of his full body, thereby advancing treatment for all others facing spinal cord injuries. I will create a new work of art for any person or entity wishing to sponsor Brandon’s recovery effort.